Stephanie Butler, RN, MSCN- One of the biggest perks of blogging and advocacy work is
getting to interact with people from all over the world. The internet really is
a wonderfully supportive tool that is making the world a much smaller place,
especially when you are living with a chronic disease like multiple sclerosis.
getting to interact with people from all over the world. The internet really is
a wonderfully supportive tool that is making the world a much smaller place,
especially when you are living with a chronic disease like multiple sclerosis.
One of the biggest perks of blogging and advocacy work is getting to interact with people from all over the world. The internet really is a wonderfully supportive tool that is making the world a much smaller place, especially when you are living with a chronic disease like multiple sclerosis.
A unique group of people affected by MS has been reaching out to me more frequently for advice and support- parents of young adults with MS. These mothers and fathers of teenagers and young adults have a unique, and often overlooked, set of challenges. They don’t live with the disease themselves, and they aren’t quite caregivers. Their children are capable of making their own life choices, and are too old to be bossed around by a parent. They no longer live under the same roof, but they often still provide their children with health insurance coverage, or financial assistance while they are in college and getting their careers off the ground. These parents are already trying to navigate their children’s growing independence, and cope with empty nests. Adding a life changing diagnosis into such a huge period of change is tremendously stressful. Their son or daughter may be slightly too old to want their mom tagging along to doctors appointments, and they can definitely make autonomous decisions for themselves, but at the same time they still have significantly less life experience. They may recognize that they need advice, but be too proud or too stubborn to seek it out. Being young, they may have taken their health for granted up until now. They may not necessarily know how to put their health and well being above the ever growing list of demands they are faced with in adulthood.
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